Hi all i saw my blood doc again on tuseday who told me i definatly have
antiphospholipid sydrome an that they no want to put me on warfrin theropy.
When i asked what about my sle she told me yes i tested positive for it in july but the test i had a month ago had not been tested for sle even thow it should of been and maybe my test results had been lost.
She then went on to tell me even thow i tested positive for sle she dosent think i have it or more to the point if i have got sle she dosent think it is that that is causing my problems and that the sle is not a issue the lupus anticoagulant is.

By this point i had lost my rag and demaned to be tested again for both as by now i was am very confused.
She told me it will take up to a year to get me feeling and the warfrin shud cure all my symptoms i told her i would belive that wen it happens.
She then told me to go away happy as i have a diagnosise i told her you are not the one who has to live with it everday and walked out.

Has any one else got the antiphospholipid syndrome?
i am very confused about the whole think again now.

KathyW1958

10-17-2008, 05:30 AM

Hi Cherie,
My name is Kathy and I have SLE Lupus. I don't have the Antiphospholid antibodies though. I have a sister with the Antiphospholipid Syndrome that is going through pretty much what you are going through. The doctor is telling her that she does not have Lupus, even though years ago she tested positive for it. I have also read on the internet where you could have the Antiphospholipid Syndrome and not have Lupus. I am wondering what your other symptoms are? You have to meet 4 of the criteria listed by the Lupus Foundation to be diagnosed with Lupus. You don't say what type of symptoms you are having. You don't say whether the doctor you saw was a Rheumatologist. I think you need to see a Rheumatologist. Please keep posting ok.

Hugs,
Kathy

cherie

10-17-2008, 09:46 AM

Hi kathy
it was a rheamy doc i saw i have also read that same bit about the lupus but have also read that[lupus anticoagulant is normally found in people who have another autoimmune disease such as lupus sle].
I have now been tested for both again as the man i saw before her who has now left who told me i have lac and sle. He wanted to do another mri scan to see if anything has changed but she has said she dosent see the need.
My symptoms are;
perminante headaches which i take amitriptyline for,
slight rash on my checks and nose rash on my hands wrists and thighs,
visual darking, lose of speach, fatige, memory lose. numb fingers, chest pain joint pain in my hands arms ellbows shoulders and coller bones, shortness of breath, sleep distubansies.

This is mostly daily and she thinks when i start the warfrin all this will go away. But to what i have read most of this should be down to the sle ive never had a blod clot fingers crossed.

Cherie x

KathyW1958

10-17-2008, 12:42 PM

Hi Cherie,
I just read your post and it most definitely does sound like you have both Lupus and Antiphospholipid Syndrome. I meant that it can be seen with Lupus and also it can be seen alone. From you symptoms, it definitely does sound like you have Lupus along with it. I think that you need to see a different Rheumatologist if you can. Lupus can be deadly if left untreated.

Hugs,
Kathy

cherie

10-18-2008, 05:07 AM

I definatly will be asking for another person in january i think that is the next time i will see her with someone else about my joints hurting.
I feel like i am the only person who is taking it serious before all this came out they thought i had eperlepcy as i had fits.
I am not sure yet when i start taking the warfrin hopefully sometime soon.

Thank you for your help and advice kathy.x

sits_inthe_corner

10-18-2008, 05:47 AM

Hi Cheri,

I'm sorry to hear you are going through this. Irritating when you leave their officing feeling they have missed the mark and don't seem to give a furry rat's ass about it.

Ask for a second oppinion. If they are insulted about that then too flipping bad. Sounds like they didn't follow through.

My family doctor is over cautions and frankly I like that about her. She'd rather be sure than be wrong.

My rheumy has a don't give a hoot attitude, here take some pills and go away.

I am on a waiting list for particular rheumy that my family doctor would like me to see but it could take awhile (along while) before an opening occurs.

Keep pushing for the tests to be redone. How can you continue with their treatments if you do not have any confidence that it's the right path?

Hope you get some answers, keep us posted.

KathyW1958

10-18-2008, 07:38 AM

Hi Cherie,
I am wondering if you can request to see a different doctor before January? I know I sure would big time. Years ago I saw an idiot that told me that all of my symptoms were due to stressing out needlessly and that there was nothing wrong with me. The idiot had the gull to tell me to go out and get DRUNK! He did not get paid for his lack of services to this day. I turned him in to the Medical Board and he got into trouble. I have seen some seriously sorry doctors or shall I say pretend doctors, hmmmm. I sure hope that you do get to see a different doctor and I hope that it is before January. I worry about you big time.

Hugs,
Kathy

cherie

10-22-2008, 05:13 AM

I rang my hospital yesterday and they told me there is no way of me being seen before jan as this rhemy wants to meet me with another rhemy together.
Me personally i want rid of her the chap i had before her was very good he wanted more tests and i mri scan to see if anything had changed and he wanted to no if the lupus was nerological because ive had fits and visual darking and the fact my dad 5 years ago had 6 strokes and 2 brain hemoridgies so he was concerned with that, but he wanted these tests done i go back to be told by her the lab work wasent done and theres no need for mri.
They make you laugh. But honestly i will be fine so dont worry i shall keep you posted thanks for caring all.x

Gurkinbabies

12-18-2008, 11:48 AM

I know I'm new here but I have both CFS Lupus and antiphospholipid antibodies both diagnosed by a rheumatologist backed up by my OBGYN during pregnancy so from personal experience It is possible to have both. I think that with my heparin therapy symptoms decreased but never went away. I'm still new to everything and havent been able to find literature on my diagnosis but as far as personal experience goes blood thinners helped and lessened the symptoms but they never went away.
Hugs and Good Luck I hope you find a decent doctor who kows how to show sensitivity towards you and your diagnosis.

lmangusrn

02-04-2009, 11:10 PM

Yes I have this disease also with my lupus and sjorgens disease. the doctor told me they were overlapping and all connected. She also feels that I have hasmotoses disease which I have been on low thyroid medicaiton for several years. They are all inter related diseases. Many people have one or all of them and the ones you don't have you could develop before to long. My doctor receommended a great book call " A Patient-Expert Walks You Through Everything You Need to Learn and Do-The First Year with Lupus" I have not read the whole thing yet but I love it and it explains everything we need to know. She talks about everything from symptoms, tests, overlapping disease, how to manage what to do. The authoe is Nancy Hanger you should try and find a copy and it might help you a lot.